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Through The Eyes of Autism…

“Autism is not a choice. Acceptance is. Imagine if the opposite was true.”__Stuart Duncan (American bluegrass musician)

Eight years ago a happily married Halena Kong- Ting would have cherished the moment finding out she was pregnant with her first child. “Like you would see it in the movies, she tells the T&T Guardian, you get married you have a baby and you have all these plans for that child.”

And much was planned for a then baby Zachary, but the baby that would appear to be ‘normal’ for the first year of his life, even showing early signs of being a literature lover at six-months-old, when Kong-Ting, a drama major and former theater arts teacher would teach him to read, suddenly stopped actively communicating close to three-years-old. His speech wasn’t that good either at that time.

On the advice of Zachary’s grandmother, Kong-Ting settled in herself perhaps he was just a late developer.

But she would then notice a strange thing, her son will no longer make eye contact during a face-to-face interaction nor will he make eye contact anymore, whenever family photos were being taken.

“I knew something was wrong, but could not tell what exactly the problem was,” she explains to us.

After a close friend and breastfeeding guide to Kong-Ting became worried about Zachary’s inability to have the speech of a two-year-old, she advised the mother to take the boy to a speech therapist, which she agreed to and subsequently did.

It was at the speech therapist’s office that Kong-Ting first heard the words ‘Zachary and autism in the same sentence.’

“She told my husband and I Zachary seemed to have a type of autism. We would later learn that his was a high functioning type of autism which just meant someone with an autism spectrum disorder who can speak, read, write, and handle basic life skills like eating and getting dressed. They may live independently, and are a lot like anyone else.”

Zachary would then be subjected to further diagnostics and juggle over the span of a year, visits to the doctor, speech therapist and an occupational therapist. This period was rough for Kong-Ting. Not only did it take a physical toll on the mother who gave up her job and other commitments to fully take care of Zachary whom she home schools along with his younger brother Raphael; a decision she took after it was found even special needs schools lacked the tools, patience and love to deal with children who have disabilities. But it was emotionally and psychologically draining as well as painful for Kong-Ting.

In addition she had to deal with the stereotyping Raphael suffered at pre-school at the hands of teachers who believed he must be autistic too just because his older brother was.

“What would be determined as normal expressions by a healthy three-year-old, was being classified as ‘abnormal’ by his teachers who even suggested to Kong-Ting he should be examined too.

Not wanting to be wrong twice, the Kong-Ting family spent thousands to ensure their other son was not in fact the same. Fortunately it turned out he wasn’t.

Accepting the difficult truth

Coming to terms with Zachary being autistic was in itself a rough and surreal transition for Kong-Ting. She tells the T&T Guardian she wants everyone to know what it is like for a parent of a child with a disability because it’s often taken for granted, but a lot of grief is involved she says.

Admitting she was in a state of classic denial finding out about her son’s condition, Kong-Ting communicates she remained in denial for about one year after initially being told by the speech therapist that Zachary may have been autistic.

“I went through the five stages of grief just preparing my mind to accept his condition. We did not go for the follow up diagnosis right away. I was just in grief and heart broken to be honest.

“We kept listening to all his grandparents about him being a late developer and held on to that for some sort of comfort,” Kong Ting reveals.

With that so-called comfort the family sent Zachary off to a normal pre-school but he could not function or relate to the lessons being taught or his peers.

“At school he would not want to participate in activities especially if these activities included noise because autistic children also suffer with sensory syndrome which basically are the five senses amplified—noise can actually be painful for them. An unexpected touch can also be quite disturbing for them, so it was difficult for him with the other kids as children play and touch all the time.”

Zachary would also experience the frustrations of not being able to tell the teacher that he cannot concentrate when she thought he was just being disobedient or lazy. Often times because of his love for reading, he would spend an entire day at school just reading charts, Kong-Ting shares.

Eventually she began to slowly believe that her son may in fact be autistic and she would need to do something about it and fast.

“I would notice at home he was unable to carry out a simple multi-step instruction like when I tell him to open the refrigerator, take a cup and pour me some water, while his younger brother was able to do it.”

With no other alternative and time seemingly running out, Kong Ting began researching on the internet all things autism.

“I went back and read the therapist’s report and on it was a referral for the Autistic Society of T&T (ASTT). I just needed to get some answers and I really did not know what to do with an autistic child at that point,” she says in a reflective tone.

Sitting in her car one day, emotional and broken over the situation, she called the ASTT.

“All I know is that I called and someone answered and we cried together.

“I was so scared, I did not even tell my husband that I was going to do it. After I agreed to take him to the society, I eventually told my husband who was initially upset as he too was in severe denial and also angry that this was happening to our son. Subsequently together, we both accepted that this intervention was needed.”

Kong-Ting says from the first day she walked into the ASTT, her life changed as they provided all the support she needed and she has learnt so much from them on autism. From the counsellor to the developmental paediatrician to the occupational therapist—they have all become family and there is a mutual love that exists. Kong-Ting has even picked up employment at the society where she gets the chance to teach her first love—theatre.

“The challenges are still there as there are good days when Zachary is helping me bake bread and cookies and then there are the not so good days where he is dealing with the challenges of being autistic and we just have to understand and support. But the good part about it now is that I don’t have to feel like I’m alone or scared anymore.”

She talks about having an autistic child affecting the other children in the family as so much needed attention is placed on that child, therefore parents have to be intentional about ensuring their other children are not left out and are very much a part of the support system and planning in the family as it relates to the autistic child. This she says, keeps them involved and at a healthy communicating level.

Kong-Ting leaves advice for a parent just finding out their child is autistic. “Early intervention is paramount. Don’t feel bad about being in denial, crying over it or even hurting over it, but talk to someone, get support because support is what will get you through this.”

On this day of World Autism Awareness Day, as the observance aims to put a spotlight on the hurdles that people with autism face, we at the T&T Guardian salute the parents of every autistic child and we share with you today Zachary’s story to commemorate not just the observance but your awesomeness!